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hot news Issue No. 116
New Health Professional Booklet The RSA has published a new booklet for Health Professionals. The aim being to disseminate important information, including tests and up to date treatment options for people who have Raynaud’s and scleroderma. Before the RSA existed, sufferers could find little information, help or advice. By raising awareness of Raynaud’s and scleroderma in a variety of ways, the Association has helped patients put a name to their symptoms and eased their path through diagnosis and into treatment. The communication between a patient and health professionals is pivotal when providing optimum care. The RSA has empowered patients to better understand their condition. This in turn allows patients to have an informed, and so improved dialogue with their treating healthcare team. The RSA has worked hand in hand with medical practitioners and researchers
and this work has led to a better understanding of the development of the disease, which has led to improved treatment. As treatments have advanced and become more complex, there has been an increase of expert, interdisciplinary medical collaboration. Specialist expert centres have evolved in which treatment of the many complications of the disease is best delivered. The pooling of this expert knowledge continues to push the boundaries of current understanding. This work is supported by the RSA. The RSA would like to thank Chris Denton, Professor of Experimental Rheumatology, Centre for Rheumatology at the Royal Free Hospital, London for the preparation of this booklet.
Volume 2 2011
In this issue...
Awareness Month Articles Pages 7 - 9
See page 3 for extracts from the booklet.
‘Cool Million’ Reaches £250,000 The Association has just reached the £250,000 milestone towards its 'Cool Million Appeal' which is running up until the end of 2012 which is our 30th Anniversary.
Fundraising Page 11
Anne Mawdsley said: “We are well on track to reaching our million pound goal and that represents a big step forward in helping to fund research into both Raynaud's and scleroderma. Everyone at the RSA would like to thank all of those who have contributed in whatever way to this landmark. We still have a long way to go in what are difficult times but we have a number of innovative fundraising events in the pipeline thanks to our strong and growing membership.”
RSA Annual Conference 24th September 2011
Fundraising Page 11
The Association’s 29th Annual Conference will be held at the Ramada Hotel in Chester. This year the speakers include Consultant Rheumatologists Dr Maya Buch, from Chapel Allerton Hospital in Leeds, Dr Bridget Griffiths, Freeman Hospital Newcastle upon Tyne and Dr Ariane Herrick, Salford Royal Hospital. Presentations will also be given by Podiatrist, Frank Webb, Dietitian, Rebecca Cowen, DHS Speaker on Benefits, Sue Baggaley, Consultant Paediatric Maxillofacial Surgeon, Andrew Dickenson, Nurse Specialist, Sister Sue Brown, Burton on Trent support group organiser Helen Nutland, and our member speaker is Kathryn Thomas. There will be plenty of opportunity to ask questions to the speakers. The conference is an ideal opportunity to learn more about your condition, whilst making new friends. Overnight accommodation is available at the hotel on the Friday and Saturday nights for those wishing to stay or you can just attend as a day delegate. For further information and to request a booking form please call us on 01270 872776 or email Fiona Trotter: firstname.lastname@example.org
Places are limited so please book early to avoid disappointment
PLEASE SUPPORT THE ‘COOL MILLION APPEAL’
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Welcome Dear Readers, At last the winter is behind us and hopefully we can have some respite from our Raynaud’s. The weather over Easter was a real bonus.
Anne H Mawdsley MBE
I would like to thank all of our members for their incredible support for our ‘Cool Million Appeal’. Your generosity and enthusiasm has been very much appreciated since we launched the campaign last year. We still have a long way to go but I am sure that we will reach our target by 2012.
My thanks to members who responded to our request for help with creating awareness through the media. This can be quite a daunting challenge but those of you who did take part said that it was a rewarding experience. Certainly your case studies have been instrumental, not only in helping the general public to understand our problems but also because many new members have joined the RSA as a result.
Thanks to everyone who has sent in their experiences of swallowing difficulties following our request in the last newsletter. You have no idea how just a few minutes of your time has been so invaluable in helping other sufferers and also the medical staff who treat us. As a result of your responses I was able to put together a leaflet outlining the problem from a patient’s perspective, which I circulated to Health Professionals at a recent GI meeting.
The two lucky winners of a HotRox were Ann Keene and Maureen Woollass. The HotRox is still my favourite handwarmer. I take it everywhere as it is so compact and effective. In this issue everyone who sends in a comment on the forms provided will be entered into a draw to win a pair of Mycoal Handwarmers - 10 prizes in total.
Meetings I am a patient representative on the Joint Speciality Rheumatology Committee at the Royal College of Physicians (RCP), which enables me to keep abreast of what is happening in rheumatology around the country. I am also on the Patient & Carer Network at the RCP, which gives me an opportunity to meet representatives of other charities. At the workshops we have discussions and speakers on NHS issues. One concern which we share is how rare or orphan diseases such as scleroderma will fare if funding of expensive treatments is taken over by GPs. Nobody knows the answer to this.
Hope for bowel problems
Going into hospital? We have a new leaflet for anyone who has Raynaud’s and/or scleroderma who is going into hospital as an inpatient. This is to remind you what to take with you, what you need to tell the health professionals treating you and any questions you may need to ask. Input for this publication was sought from patients, nurses and hospital consultants. The leaflet can be updated at any time so if you have ideas which you feel could be added in the future, just let us know. To receive a copy please send an A5 SAE to us at Head Office.
Having had major bowel surgery and two sacral nerve procedures in the last few months, I was very much hoping to report how these have helped. I have had a sacral neurostimulator implanted, which is a small computer programmed at the hospital, aimed at stimulating the sacral nerves. I am now bionic! However, it is early days and I have to be patient - not one of my virtues! However, if there is an improvement in my symptoms I will ensure that the information Thank you is passed on through Hot News. Watch this A sincere thank you to everyone who has space! sent donations in lieu of flowers in memory of loved ones, also to individuals, Your feedback please UK Scleroderma Study Group As a result of such an excellent response to companies and charitable trusts who have Other committees which I sit on are the swallowing feedback, we are asking for supported us – we really are most organised by Prof. Chris Denton and Dr your help with two other issues. One being appreciative. Ariane Herrick, on behalf of the UK bowel problems in scleroderma and the Percy Pics Scleroderma Study Group, to look into other asking for your favourite tips on Thanks to everyone who has sent in photos investigation and treatment of the coping with Raynaud’s. The forms to of Percy on vacation. With the holiday gastrointestinal tract and digital complete are on the back of your address season approaching we look forward to vasculopathy in scleroderma patients. sheet. Please look at this each time as there receiving many more and will be publishing These involve discussions in order to put will always be some important information a selection in the next issue of Hot News. on the reverse side. together ‘Best Practice’ measures.
CEO & FOUNDER Anne H Mawdsley MBE
PRESIDENT Prof. Dame Carol Black DBE
TRUSTEES Barry Hicks, Joanna Kaddish Kevin Lafferty, Beverley Myers, Jeremy Pearson
Sharron Davies MBE
Prof. J Belch; Sister S Brown
Roger Jefcoate CBE
Prof. C Denton; Dr. A L Herrick
Veronica, Lady Piercy
Dr. C Lovell; Dr. R Macdonald
Prof. P Maddison; Prof. R Moots
David Wilkie MBE
Prof. D Scott; Prof. A Silman Dr. D Veale
HEAD OFFICE: 112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: email@example.com Website: www.raynauds.org.uk Charity Reg. No. 326306 DISCLAIMER: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products. Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.
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News & Views New Health Professional Booklet What is Raynaud’s? Raynaud's phenomenon describes episodic vasospasm of the extremities triggered by cold or emotional stress. Many of the connective tissue diseases are associated with Raynaud's and it often precedes the development of other manifestations and provides an important warning sign. However, Raynaud's is common and it is important to focus on associated “red flag” features that point to an associated connective tissue disease. • Raynaud's phenomenon (RP) is a common, episodic circulatory disorder. Raynaud's is most usually found in females. It affects between 3 and 20% of the adult population worldwide and there may be as many as ten million sufferers in the UK. It is different from chilblains, acrocyanosis or permanently cold, blue or white hands. • The hallmark of Raynaud's is a biphasic or triphasic colour change of the extremities. The digits turn white, and/or blue and red. This happens on exposure to the cold, or to sudden but slight temperature changes, stress, or sometimes with exercise. The extremities mostly affected are the fingers and toes, whilst the ears and nose may also be affected. In addition the patient may complain of pain, numbness or tingling. It can affect children, adolescents and adults. • It is generally a benign, primary condition, patients needing advice only on ways of maintaining a constant body temperature. Primary Raynaud's usually begins in the teens and early 20s and represents an exaggerated response to cold and other stimuli. However, the condition may also be severe and indicative of an underlying disorder. The development of the first symptoms of RP at an older age (35+), in males or associated with other symptoms and signs, suggests that it is secondary to another condition. • Secondary Raynaud's, although less common, is being increasingly recognised and is associated with an underlying medical condition. Because many of these associations are serious, a careful history and examination should be taken on each patient so that referral to a specialist centre can be made if necessary. • Prompt recognition and treatment of underlying problems can do much to modify the condition and improve the quality of life for sufferers who, in very severe cases may have severe pain, persistent ulcers, infection and ultimately
gangrene, with amputation.
What should a doctor do if presented with a patient with Raynaud’s? Take a careful history and perform an examination, looking for signs of underlying disease: (a table of signs and symptoms is included in the booklet) The two most important tests to perform in the context of RP: Determining the presence and significance of Raynaud's phenomenon depends upon careful clinical assessment and when RP is present two investigations are essential:
Autoantibody testing - particularly looking for ANA
• A blood test for anti nuclear antibodies (ANAs). (The ANAs and their associated diseases are listed in the booklet).
Nailfold capillaroscopy • Nailfold Capillaries looking for an abnormal pattern. This examination may, with practice, be done in the surgery with an ophthalmoscope. Abnormal patterns include dilatation of many loops or 'giant' loops and/or vascular areas with no visible capillaries. The doctor may wish to arrange them himself or simply refer the patient onto a specialist to pursue the matter. These tests have predictive value and are of great importance. Three results are likely: 1. Both tests are negative. If so, the patient is highly unlikely to develop a Connective Tissue Disease (CTD). These patients can be reassured and treated symptomatically. 2. If the ANA is positive but is not a disease associated antibody, the patient should be kept under regular review as they may develop a connective tissue disease. 3. If the ANA is a disease specific one they need close review, as disease development is much more likely. 4. If the capillary pattern is abnormal then patients should stay under review as they are at increased risk. NB. Laboratory tests must be interpreted in the light of the clinical context. Approximately 5% of the general population have a clinically irrelevant positive ANA in the serum so a positive ANA in isolation may have no diagnostic significance. Its significance relates to the associated Raynaud's and other symptoms. Likewise abnormal nailfold capillaries are often present in healthy individuals and outside the context of RP.
Treatment Regimes for Raynaud’s Many treatments are available. Only one drug, nifedipine, is licensed for Raynaud's. Patients sometimes find the side effects of this drug intolerable. Therefore one has to, as in other uncommon conditions, use drugs off license. It is important to have a variety of drugs with which to alleviate the symptoms. Many patients with Raynaud's like to try natural products before using conventional drugs. There is a network of helplines around the country staffed by very knowledgeable nurses. A phone call to the RSA will help to find you the nurse closest to your area. These helplines are useful to both doctors and patients. Below is an extract from the scleroderma section:
What happens after referral? • The diagnosis and subset are confirmed • The disease is staged • Organ involvement is investigated • Secondary complications are assessed • A treatment plan is designed Scleroderma can be classified into localised scleroderma - sometimes called morphoea or linear scleroderma. This is particularly common in children and is largely a disease of the skin and underlying connective tissue (muscle and bone). Childhood scleroderma is a very uncommon condition.
The Raynaud’s & Scleroderma Association is very keen to help patients and their families and to put children in touch with each other if they so wish Scleroderma in childhood is often localised and very rarely life threatening; yet because it is often a chronic illness its morbidity problems may pose additional psychological stresses which both patient and family members find difficult to handle. They may feel isolated and come to resent the disease. Adolescence is a particularly difficult time with substantial emotional stress and mood fluctuations that make a chronic disease especially challenging. Any awareness of these psychological aspects must be taken into account whenever one is dealing with the individual patient, as well as a careful explanation of the disease process, its course, treatment and prognosis. If you would like a copy to give to any of the healthcare professionals looking after you, please send 2 x 2nd class stamps with your request.
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Doc Spot Your Questions Answered Professor Chris Denton
Consultant Rheumatologist, Royal Free Hospital
I was wondering if fibromyalgia is a progression of Raynaud’s or is it the same ‘family’ of illnesses as Raynaud’s? If so are they both treated by a rheumatologist and is there anything which can be done apart from medication to help with sleep and pain? Fibromyalgia is a specific rheumatic disease in which there is a marked increase in susceptibility to pain in the joints, muscles and soft tissues with severe tenderness at specific “tender points” on examination. The precise mechanism is unclear and fibromyalgia is a challenge to treat but fortunately not life-threatening. Pain control is the main treatment goal in fibromyalgia although drugs to help with normalising sleep pattern such as amitriptyline can help in some cases. Unlike arthritis or connective tissue disease all blood tests are normal. It is not associated with Raynaud’s although both conditions are common and so may occur together by chance. What effect can Raynaud’s have on rheumatoid arthritis? I have rheumatoid arthritis in both hands and wrists and osteoarthritis in my finger tips. As Raynaud’s, rheumatoid and osteoarthritis are all quite common they often occur together. Arthritis can occur also in connective tissue diseases where there is an association with secondary Raynaud’s. My impression is that pain and discomfort from arthritis is more severe when there is coexistent Raynaud’s although the reason for this is unclear. I have had Raynaud’s and erythromelalgia for many years now. I have noticed for a long time that when I exercise (do tap, cycling, exercise DVD's etc) I get colder and not warmer. When everyone else in tap is taking off layers I am putting more on. Is this common? Would taking ginkgo biloba help? Raynaud’s phenomenon and erythromelalgia (EM) are both conditions associated with altered reactivity of the blood vessels in response to change in temperature and emotion. In some cases exercise can trigger Raynaud’s attacks and this probably reflects an increased response
to the signals that divert blood supply to the muscles for exercise. This can divert blood away from the skin and extremities and cause Raynaud’s and a subjective feeling of being cold. Treatments for Raynaud’s may help. Ginkgo biloba has been found to benefit some patients with Raynaud’s and so could be considered as well as other vitamins, supplements or even prescription medications for Raynaud’s. I have recently been diagnosed with Raynaud’s. I am 35 years old and want to know if I have this for life or if it is temporary? My doctor said he couldn’t answer that question. Raynaud’s phenomenon (spasm of blood vessels in the hands and feet triggered by cold or emotional stress), can occur in isolation (primary Raynaud’s), or be associated with an underlying medical condition such as a rheumatic disease (e.g. lupus, scleroderma – termed secondary Raynaud’s). Primary Raynaud’s is much more common. In both cases it is likely to persist although the severity may change and you may be able to improve symptoms by lifestyle changes such as stopping smoking, keeping warm centrally or with medication. I have Raynaud’s which is affected as much by stress as by cold. Can you suggest any remedies for stress, especially nonprescribed drugs, to reduce the symptoms? You are right that emotional stress can provoke attacks of Raynaud’s just as much as cold exposure. It is hard to treat stress directly. Some patients find vitamin supplements helpful. Drinks containing caffeine and smoking should be avoided, as these may worsen Raynaud’s. Some patients report that herbal tea is beneficial. Other approaches are outlined in the RSA’s Raynaud’s information on their website. I am 38 and have primary Raynaud’s and do not have to take medication for it. I was given the mini pill (progesterone only) 'cerazette' by my family planning clinic and checked today with my GP to see what she thought before
commencing it. She said she needed to find my old medical notes from when Raynaud’s was first diagnosed before she could comment on whether it was safe or not, but the family planning clinic insist that it is. I have a few varicose veins but normal blood pressure, am not overweight etc. What is your opinion of the use of the mini pill and Raynaud’s? There is no evidence that the mini-pill is harmful in Raynaud’s. Often this is preferred in connective tissue disease to a combined pill that has oestrogen in it, as oestrogen is associated with increased risks of cardiovascular disease although it is not associated with Raynaud’s worsening. In pregnancy when oestrogen levels are high, Raynaud’s often improves temporarily, but can worsen back to baseline after delivery. Is there a link between tennis elbow and Raynaud’s? I do not think there is any direct relationship between tennis elbow and Raynaud’s. Both conditions are sufficiently common that they will frequently occur together. I work in an office where the air conditioning is really cold and it makes typing very difficult. I can’t afford to lose my job but how can I explain to my manager that it is an uncomfortable temperature to work in? None of my colleagues have Raynaud’s so I feel quite isolated. My suggestion is to ask your GP or doctor for a letter highlighting this as a medical issue and approach your occupational health department if possible, or your manager at work. Perhaps there is the possibility of moving to a warmer location in the office. I have been prescribed nifedipine for my Raynaud’s. Since taking it I have been having bad headaches. Why is this and should I continue taking it? Treatments for Raynaud’s include a number of drugs that open up blood vessels and nifedipine is one of these. This can cause headaches, sometimes associated with a lowering of blood pressure and dizziness. Sometimes it is possible to adjust the dose or frequency to minimize these side-effects but otherwise there are alternative treatments or formulations of nifedipine and you should discuss that with your doctor.
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Doc Spot I understand that there are approximately 8,000 people who have scleroderma in the UK. Where does this figure come from? It is very hard to know the exact number of cases for a disease like scleroderma that is uncommon and under-diagnosed. Attempts have been made to look at small regional populations and extrapolate the results. In the UK, the most recent estimates have been around or just above 1 in 10,000 of the population, hence the figure of 8,000 in the UK. In other European countries a similar figure emerges but in the USA scleroderma is thought to be about twice as common as in Europe. I have limited scleroderma and in 2000 I had to spend some time in hospital. I was put on steroids and discovered that I am one of those people on whom they seem to have the opposite effect to normal. Within days I was having horrendous cramp-like pains in my muscles every time I moved, my weight fell off and I spent a week in bed so ill that I was not allowed visitors. My condition is fairly stable but I am on hydroxychloroquine at the moment, and have been so off and on in the past. I know that statistics say that my future deterioration is likely to be gradual, I also know that steroids are the best weapon against the disease. I wonder therefore what medication I could/would be given if my condition should begin to deteriorate more rapidly or to a degree where I needed a more powerful drug? I am thinking in particular of my lungs. Although steroids can be a powerful and useful treatment for a number of rheumatic diseases there are specific concerns in using steroids in scleroderma as they can increase the risk of kidney disease as well as their usual side effects. We usually try to minimise the dose in scleroderma and duration of treatment. There are specific situations when they can be helpful but like any medication if they aggravate rather than improve your symptoms it may be better to look at alternative approaches. Other agents including hydroxychloroquine can be used to treat symptoms in connective tissue diseases including scleroderma and are sometimes referred to as “steroid sparing” agents as they can allow the use of steroids to be reduced.
I have a hiatus hernia and have been told to be careful with my diet. As my local hospital doesn’t have a dietitian, where can I find what diet is relevant to me? I also have scleroderma. Could the hernia be linked to scleroderma? Scleroderma is almost always associated with heartburn and reflux, which are symptoms of a hiatus hernia and these can usually be improved substantially using drugs called proton pump inhibitors that suppress stomach acid overproduction (e.g. omeprazole). If the symptoms are improved then you may find it less necessary to be careful what you eat. If the symptoms cannot be controlled it may be possible to see a community based dietician via your GP. Almost everything I eat seems to get stuck in my throat. Then I start coughing and have to drink water. At night I wake up coughing and I cough so much it makes my lungs sore. Is there any solution for the cough?
This is an important question – ACEi have transformed outcome from renal crisis but there is no good evidence for a preventative benefit. We used to always do this but recent data make us less certain – so our current approach is usually only to start ACEi if high blood pressure develops in scleroderma, but not for prevention. However, some patients do find benefit for their Raynaud’s from ACEi, so, it is fine to take ACEi but the value of them for prevention of renal crisis is unclear. Being on ACEi should not stop everyone being vigilant about blood pressure etc (this would be a theoretical risk – take a preventative drug then forget about the risks).
NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore Royal Free 020 7472 6354 (For Pulmonary Hypertension Enquiries)
An important treatment for a cough is to try and minimise the effect of acid-reflux from the stomach (heartburn). Acid reflux is almost universal in scleroderma and irritates the throat to cause a cough, especially when lying flat at night. There are concerns that it may eventually aggravate lung fibrosis or scarring. So treatment should include medication for heartburn such as lansoprazole or similar drugs. Sometimes other medication is also needed and you should discuss this with your doctor.
Specialist Nurses Royal Free 020
Is it true that people who have scleroderma have a deficiency of Vitamin D?
Audrey Hamilton 02890 Belfast
The relationship of Vitamin D with immunity is complex but of interest – and there is much discussion and debate on the topic. We routinely measure Vitamin D now and it is very often low both in the general population and in rheumatic disease. In scleroderma there could be issues about diet and absorption. If it is very low we recommend replacement treatment but the significance of borderline low levels is much less clear. My view is that in a chronic disease, it is good to make sure that all vitamin levels are as normal as possible, as vitamins have a vital role in cell growth, immune system etc.
Paula White & Julie Ingall Portsmouth 02392 286
I have been advised to take ACE inhibitors to prevent kidney involvement in scleroderma. As my kidneys are fine at the moment is this necessary?
Sue Brown Bath
01225 428 823
Liz Wragg Manchester
0161 206 0192
Specialist Nurse Leeds 0113 Jan Lamb Liverpool
0151 529 3034
Karen Walker Newcastle upon Tyne
0191 223 1503
Jayne McDermott Sheffield 0114 Lucy Pigram Brompton
561 310 935
0207 352 8121
(For Lung Enquiries)
Steve McSwiggan Dundee 01382
(Only available Mon, Tues & Wed mornings)
The nurse advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice. It should be emphasised that the nurses who run the advice lines also have very busy schedules and therefore on occasions you will get an answerphone to leave your details for the nurse to get back to you when available. The advice lines are not intended for use in an emergency.
If you have a question you would like Professor Chris Denton to answer, please send to Head Office 5
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News News from Italy The Scleroderma Ulcer Care Unit of the University of Florence operates within the Division of Rheumatology and the Regional Referral Centre for Systemic Sclerosis, drawing on the expertise of a rheumatologist and three nurses trained in wound care rheumatology. All scleroderma patients who attend the referral centre may receive intravenous therapy in an outpatient setting and benefit from rheumatology outpatient visits. Indeed, all patients have at their disposal an everyday service for the management of skin lesions. The management of skin lesions in scleroderma patients must be set according to a team work that requires the expertise of various professionals, working in an interdisciplinary system, to ensure the best approach and the choice of the treatment directly proportional of the digital lesions and ulcers observed. The team consists of the patient, physician and nurses: the patient must become an active part in the course of treatment, participate in treatment decisions and share these decisions with professionals.
Moreover, a correct and timely diagnosis and an appropriate systemic therapy with control of the disease symptoms are mandatory, together with the local treatment Indeed the treatment of pain is essential from both the systemic and local point of view in order to maintain the quality of life. The wound care usually starts with an interview with the patient that allows to set the groundwork for treatment, to assess the degree of disease advancement and its impact on the patient, and to assess the level of awareness achieved by the patient. This preliminary collection of data offers the opportunity to understand what resources and capabilities are available. The clinical approach begins with an assessment of the extremities, with special reference to the level of oedema, atrophy or sclerosis and possible joint deformities that slow the healing process when affecting the interphalangeal areas. The primary objective of the local management of skin lesions should be the assessment and control of pain together with the evaluation of the characteristics of the lesion. This may help to recognise the potential collateral overlapping of other causes of digital lesions and thus focus on the best working methodologies to remove them. The assessment of an ulcer must consider the presence of devitalised tissue that can cause pain for the release of toxins and/or become a breeding ground for bacterial growth resulting in an infection. It is important to recognise the early signs of infection and to start an antibiotic therapy in combination with local antiseptic devices. The frequent drying of the wound bed can cause pain and result in a delay of the proliferation of granulation tissue and progression of the wound edges. Therefore, it is important to pay attention to the following four aspects - the removal of devitalised tissue, control infection or inflammation, moisture imbalance and proliferative margins - to foster the best conditions for a prompt healing process. The Scleroderma Ulcer Care Unit of the University of Florence F Braschi & M Matucci Cerinic In the next issue there will be an update from Dr Ariane Herrick, Consultant Rheumatologist at Salford Royal Hospital regarding ulcers to complement this article.
FESCA representatives at the meeting in Budapest
Fiona Trotter represented the RSA at the FESCA meeting in Budapest at the end of March. FESCA is the Federation of European Scleroderma Associations, which is an umbrella organisation aiming to increase awareness, patient power and improve treatments for scleroderma patients globally. Other countries represented at the meeting included Belgium, Croatia, Denmark, France, Hungary, Ireland, Italy, Poland, Portugal, Spain, Sweden and Switzerland. Items discussed at the meeting included World Scleroderma Day, which will take place on 29th June 2011 to highlight the importance of early diagnosis of scleroderma and the Second World Congress which will take place in Madrid in February 2012. Ideas were shared about how FESCA can continue to increase understanding, raise awareness and empower people about the condition. Professor Laszlo Czirjak, Department of Immunology and Rheumatology, University of PĂŠcs, Hungary, gave an excellent presentation and was supportive of FESCAâ€™s hard work.
Scleroderma World Congress If you are interested in receiving details of the World Scleroderma Congress in Madrid please contact Fiona Trotter for further details and costs on 01270 872776 or visit the FESCA website: www.fesca-scleroderma.eu
Solution to Saliva Problem? As well as suffering from diffuse scleroderma, I also have SjĂśgren's Syndrome, which has affected the efficiency of my salivary glands. This has resulted in my voice either disappearing altogether or being very hoarse. At one time, it was thought that I possibly had throat cancer, but tests fortunately proved to be negative. I then discovered a real wonder drug called Salagen, manufactured by Novartis. I take three tablets a day and my production of saliva has returned to normal, and my speech is now fine. It also helps dry eyes, dry vagina, etc. A possible side effect is the production of rather more sweat than normal, and when I am hot my hands sweat more than they used to. It is by no means a major problem and the benefits far outweigh any side effects. Salagen does not appear to be held in stock by chemists and some people may experience difficulty in getting hold of it. Should this occur, advise your pharmacist to contact Novartis directly. Salagen does not solve my dry throat at night but despite this, the benefits are enormous. RSA Member Tricia Howland
Publication costs for this issue of Hot News are jointly supported by Pfizer Ltd and GSK. Pfizer Ltd and GSK have no editorial input or review of the content of this newsletter and the opinions expressed are the opinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of Pfizer Ltd. or GSK.
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Media Melanie’s Media Experience It all started in June 2004 when I was on a multi activity holiday in Slovenia. It was a chilly damp day and I got very cold. I noticed that the index finger on my left hand had gone completely blue and however much I tried to warm it nothing seemed to happen until quite a while later when we were in a restaurant. On my return home I tried in vain to put my rings back on but my fingers and hands had become very swollen. At the time I worked in a very high profile office with my colleague where there was air conditioning and because everyone's body temperature is not the same, I ended up frequently wearing a body warmer and a scarf - even in the summer! My boss would often say to me “Mel are you staying with us today”? The attacks occurred several times each day and by the late summer my legs were beginning to swell. I thought nothing of any of this really until December when I decided to go to the company doctor who said that I had Raynaud's. He referred me to a vascular consultant, who sent me for tests, which came back as secondary Raynaud's. I was put on nifedipine, which worked for a while but not as well as he had hoped so he tried patches which weren't any good either. The consultant then said this was as far as he could go (the pain in my joints was progressing rapidly) and he referred me to a rheumatologist who did blood tests for arthritis, which were positive. I was also having problems swallowing and had tiny bubbles coming up into my mouth. I was then referred to a gastroenterologist who sent me for tests and then diagnosed that I now had CREST syndrome. By June 2005 the puffiness had worked its way through my entire body which had become tighter and inflamed; I had terrible itching, especially on my scalp and my chest; I was incredibly tired and was finding it very difficult to walk in office shoes so had no choice but to wear flip flops. I was becoming very weepy and by the end of July my rheumatologist said he thought it was now time to refer me to his friend and colleague Prof Carol Black at the Royal Free Hospital. I thought “not someone else”, but he said this is the final one now; she is a specialist in the condition you have. I felt so ghastly that I didn't really take in what he had said, all I knew was that he would be writing to Prof Black and that he would tell her that this case was of an urgent nature. An appointment came through for August. I had made notes, which she read through and immediately
diagnosed scleroderma and called up Dr Chris Denton (now Prof Denton) who examined me and arranged an echocardiogram and blood tests. They also said they would arrange for lung function tests. I went in for an infusion of iloprost in September 2005 and also had Antithymocyte globulin (ATG). I felt very much better after this and eventually returned to work, but within a month I had a terrible flare up and felt as if I was back to square one. I went back to see my consultants who suggested trying to find alternative work nearer home. By this time my boss knew of my problems and told me to take 3 months sick leave which I did from December. I left London and went to stay with my parents in Oxford as I really couldn't live on my own any more. The scleroderma then went into my bowel and the bouts of tiredness were intense, I was sleeping more than being awake, I completely lost my confidence, became depressed and didn't want to talk to anyone because I knew that they would ask me how I was feeling and I felt horrible and was very weepy. As I didn't understand the disease I couldn't explain my feelings to anyone. What was most frustrating was that I looked so normal. In February 2006 I went in for a further iloprost infusion, and by the end of February, my boss decided to pension me off on the grounds of ill health. I shall be eternally grateful to him for doing that. He said he would look after me and this he did so amazingly well. The rest of the year was horrible. I tried acupuncture, which helped heal my mind as it was very troubled and I had to let it all sink in. I was visiting the Royal Free every 4 months and was on a cocktail of medication. The following January, 2007 my mind was beginning to clear but then the muscles in my arms and legs became very sensitive,
ached and I was hardly able to walk or lift my arms, and the balls of my feet became inflamed and were agony to walk on. The Royal Free took blood tests and the result confirmed I now had myalgia and arthralgia. They also suggested that my GP refer me to a podiatrist to sort out insoles and general foot care. This was done quickly and efficiently and to much relief. Ulcers started this year on my feet and fingers, funnily enough in the summer, so I was in and out of the nurse's room at the health centre twice a week. In 2008 I was feeling a lot stronger and as I was now able to describe my case study I was asked by the RSA to do an interview for That's Life magazine. I was interviewed over the telephone and then the conversation was repeated back to me on about 3 different occasions, I have to say that each time was quite emotional but we got there and it turned out to be very well done, so I felt really chuffed with the final article.
I told myself if this helps other sufferers then I must continue to be as positive as I can Last year I was asked by the RSA to take part in a radio interview, in 2010 on BBC Radio Oxford where I was interviewed by Louisa Hannan. I made notes first about my case study and did a bit of research as I was always learning about the condition and she made me feel at ease and it was all quite exciting. She asked me a bit about the condition and was very interested when I explained a little. Fortunately, Anne Mawdsley was on the other line to confirm and explain some of the technicalities with all her experience. Anne joined me again for the second interview for Radio Oxford this year, when the interviewer was Malcolm Boyden. From time to time when I am having my regular iloprost infusion at the Nuffield Orthopaedic Centre in Oxford, I am used as a case study guinea pig for medical students, which I rather enjoy. I am hoping to start a Support Group within the Oxfordshire and Berkshire area. I have started with posters and leaflets in my GPs surgery and the local community centre and library. I have a place booked for a charity collection in Summertown in June 2011, so gradually I am helping to spread awareness and hope it will bring some results in the not too distant future. Melanie Bowen, Oxford Tel: 01865 515067
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Case Studies Brenda’s ITV Experience
In January I had an email from Fiona, asking if I would be prepared to be interviewed by ITV Central News who were wanting to speak to someone with Raynaud's during Raynaud's Awareness Month. My first thought was 'NO' - I don't like attention and I keep my hands hidden away, but after second thoughts, despite my misgivings, I said I would do it. I then wrote down how Brenda Preston Raynaud's has affected me during the 40 years I have suffered.
I started getting problems with my fingers in the winter 17 years ago, they went red, blue, black and white and hurt when the feeling came back. I went to my GP who diagnosed Raynaud’s but also took a blood test. I was prescribed nifedipine which I hated taking as it made me feel really dizzy and sick. The main problems I had were the severe pain, especially as most of my fingers were Marisa Moore ulcerated and also my toes, once causing me to take 2 months off work as I couldn't walk properly. I also get calcinosis on my fingers due to having scleroderma. These days I don't seem to suffer as much but this may be due to having 5 days of iloprost before each winter. I still find it hard to cope in the cold with my feet and hands and struggle with dressing, using keys and generally being outside. I also find myself dreading the day ahead, particularly when there is a lot of snow. I work full time and have to walk to work and back. I now take ginkgo biloba, ginger and eat lots of chillies and garlic to help my circulation. Marisa Moore Marisa was interviewed on BBC Radio Norfolk during Awareness Month
At 16 I had pain in my fingers; they changed colour from white to blue to red and I was diagnosed with Raynaud's. I had a sympathectomy which involved the nerves being cut at the top of my back. This did not help. I tried any number of tablets until about 15 years later I started taking nifedipine, which helps. Some years, I stop taking the tablets in the summer, but then I have to reintroduce them gradually to 2 a day. This slow build-up helps me avoid the bad headaches caused by blood reaching all extremities including the head. The worst time for my Raynaud's was when my children were young, dealing with nappies and nappy pins, small buttons, taking them to the park, waiting at the school gate and carrying heavy shopping bags. Over the years you learn to adapt how you do things, avoid things and also ask for help. I wear thick gloves to go to the freezer, use Mycoal hand warmers when out in cold weather and wear lots of layers. Air conditioning, the freezer section of supermarkets, holding a cold glass or metal object, picking up coins or pins can all cause me problems. The pain if I knock the tip of a finger is excruciating. Over the years because of poor blood flow and so many ulcers, my finger tips have been permanently damaged. This causes problems even when my hands are warm. Having thought through 'My life with Raynaud's' I was now prepared for the interview. ITV were coming to my house - I was expecting a whole outside broadcast team with a large van, but in fact the whole news item was done by one person. The reporter, Charlotte, arrived with a large bag containing camera, tripod, sound equipment and a notebook. She was so friendly and put me at ease straight away. We chatted, then Charlotte set up the camera on a tripod, sat on a stool at the side and asked me questions and chatted while the camera was rolling. With a microphone attached to me, we then went into the kitchen where I prepared vegetables wearing rubber gloves and made a salad. Charlotte's visit lasted about 90 minutes before she went back to ITV Central office in Birmingham to do the editing. Anne Mawdsley was also being interviewed in a studio for the same programme. I was informed that the item would go out a couple of days later, so I told a few friends and family to watch. It lasted about 4 or 5 minutes. Several friends who watched the programme said they were unaware of some of the problems I have. Even though I only told a few people about the programme, many others saw the news and rang me. I felt quite a celebrity! Hopefully, the item has helped raise awareness of Raynaud's in the Midlands, so that other sufferers can benefit by being aware of the RSA.
Rose There’s one thing Rose Bevan, from Tayport, always has to do before getting a pint of milk from the fridge - put on a pair of gloves. Rose knows even a quick dive into the freezer can be enough to trigger a painful attack. “I get it in my hands, feet, nose and ears,” says Rose. “It’s a burning cold and you’re never sure how long it’s going to last.” Rose always wears several Rose Bevan layers of clothes and even layers of gloves. She reckons winters are only bearable thanks to a treatment at Ninewells Hospital in Dundee. It involves an infusion of a man-made version of the natural hormone prostacyclin that opens up the blood vessels and prevents the blood flow becoming sluggish. Rose reckons her annual session is invaluable. Taken from the Sunday Post The RSA would like to thank Rose and members of her local group who raised over £500 and created awareness of Raynaud’s and scleroderma in Wellgate shopping centre in Dundee during February.
Case Studies Wanted Case studies play a vital role in helping the RSA to gain publicity. If you would be happy to speak to a journalist on the phone about your Raynaud’s and/or scleroderma, please contact Fiona on 01270 872776 or email firstname.lastname@example.org.
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"The first time, my fingers turned white in a slight breeze on a summer's day," said 39 year old Alison Wright. She went to her doctor who diagnosed Raynaud's. That was six years ago and she has suffered regular "attacks" ever Alison experiencing a Raynaud’s attack since. It is particularly bad in winter, when it's cold. This is when Alison experiences a lot of pain. "My fingers can be white and painful every minute of the day in winter. It's a combination of pain and numbness, like trapping your finger in a door - except it affects every finger," she says. Alison says she has learned to live with the pain. "I have got used to it. It does reduce me to tears sometimes, but I have learned to manage it and I don't want it to get the better of me." "The worst thing you can do is put your hands on a radiator after an attack," she says. "I have to warm up my hands and feet very slowly and gently once they've gone white, but they can stay that way all day." When she was first diagnosed, Alison tried a variety of medicines to help improve her circulation and keep the blood vessels dilated. But some of these caused complications and adverse reactions. Instead, she now uses handwarmers, silk liners and thick socks to try to stave off any attacks. Getting money out of her purse with numb fingers or picking up cold milk bottles are everyday frustrations which she endures. She has given up skiing but exercises by going swimming and teaching pilates. Alison's favourite coping mechanism is a regular winter holiday in the sun. "It's great to know I can escape the cold for a week or two," she says.
Katy Middleton, 37 from South Shields, was diagnosed with Raynaud’s and scleroderma, just over two years ago, having had no previous health problems. “The tips of my fingers started going black, and by black I mean as if I had dipped them in ink,” she said. “They went from black to navy blue to bright red and then completely white. The pain was absolutely excruciating. When you come in Katy Middleton from the cold, your face and hands start to smack a bit, but this was like having them trapped in a door.” Katy went to see her GP, with everything from rheumatoid arthritis to frostbite running through her mind as possible causes for the pain. She ended up in hospital for a week, hooked up to a drip with a drug called iloprost, which is used in severe cases to improve the circulation of the blood. Her condition is now monitored with a lung function test every six months and, if needed, low doses of chemotherapy to regulate her immune system. Other than that, she keeps her hands warm by tucking heat pads into mittens and keeping a mini-electric blanket by her side at work. “The only thing that will warm your hands up is direct heat,” she said. It is really quite annoying in the summer, because you can be hot, but your hands are freezing. You can be wandering around in a vest and a pair of gloves.” As well as cold hands or feet being painful, sufferers of Raynaud’s find everyday tasks such as unlocking a door, getting food out of the fridge or opening a jar can become impossible. De-icing the car and opening a bottle of shampoo in the shower prove problematic for Katy, who said: “Your fingers go white and numb, which is awful because you can’t feel anything.” Taken from the Shields Gazette
Taken from BBC Online Alison was also featured in an article published in the Portsmouth News during Awareness Month
Beverley Beverley Black from Banchory has suffered from scleroderma for the last 30 years. She first experienced symptoms of Raynaud’s in 1979.
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Beverley said: “The Raynaud’s was triggered when I was still a student. I was on a mountaineering expedition to Greenland with Durham University when a good friend died. The shock of the incident could have been a trigger.
However, it wasn’t until two or three years later when I found out the Raynaud’s I was getting was actually part of scleroderma - this bigger disease that was underlying. Initially, I felt the symptoms of white, numb hands, but I didn’t know what it was. It was by chance I found out about the scleroderma, because I was in hospital for something else when I got recommended to have my hands looked at. Although Raynaud’s is quite common, people often ignore it and don’t
realise it could be a sign of something more serious.” Beverley continues to lead an active life and loves nothing more than hillwalking and skiing despite struggling with the cold, thanks to various gadgets and medication. She explained: “I have lived with it for all this time and have always been very active. I’m still able to do this through using gadgets to keep me warm as well as medication, which keeps the other symptoms at bay. However, in the last few years, the condition has slowly caught up with me and my energy levels have declined and because all the vessels in the body have become rigid and stiff, they don’t function properly, so it leads to draining energy levels.” Beverley works as a self-employed artist and regularly draws on her experiences on the mountains and finishes her work at home, where she needs a high temperature to allow her fingers to function properly. Beverley has urged people with similar conditions to stay positive. She said: “I guess the message I want to get out there is that although you have these illnesses, it should not stop you getting out and living life on your own terms.” Taken from the Donside Piper
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News I try to keep my sense of humour I was diagnosed with systemic scleroderma and Raynaud’s in October 2005. I was told my treatment would be an iloprost infusion, which meant a few days stay in hospital.
for me! Makeup maybe once a year because my mouth is a bit lopsided, I have no real upper lip and I cannot put my top lip over bottom lip so lipstick is out of the question.
Travel Insurance Are you thinking of booking a holiday but worried about getting insurance for a preexisting medical condition? If so then call the companies below which have been recommended by members, for a quote.
All Clear Tel: 0845 250 5200 With the limited mouth Club Direct Tel: 0800 083 2466 opening my dentist has This came as a terrible Freedom Travel Tel: 01223 454290 found treating me very shock to me as I had Free Spirit Tel: 0845 230 5000 difficult. After 10 months only recently finished Insurance Choice Tel: 0844 5577 703 the PCT has finally agreed chemotherapy and radioIt’s So Easy Tel: 0844 357 1315 to me being seen in the therapy treatment for local hospital dental unit Nasopharangeal Cancer Saga Travel Tel: 0800 015 8055 but for some reason I (head and neck). The Pauline Goodchild Staysure Tel: 0844 277 7200 have to pay!! Talking of feeding peg in my tummy Insure and Go Tel: 0844 888 2787 limited mouth opening, has anyone ever had also recently been removed. Post Office Tel: 0800 169 9999 Chemotherapy left me with nerve damage heard of or used Therabite for mouth in my feet and the radiotherapy treatment stretching? I use this very occasionally meant that I would not produce saliva, my which I have been told I must, to keep my This year the British Skin Foundation (BSF) mouth opening would be smaller and it very limited mouth opening. would be difficult to swallow. I was told that As for eating out that’s a definite NO. It’s will be holding their Walk for Skin event at the mouth opening and swallowing would bad enough trying to eat in my own home places in different parts of the country: probably improve as I started eating as I choke, cough and food/liquid goes up Leeds, South Downs, Pennines, and regularly. I was not told at the time that the my nose. I do have a coffee when out Glastonbury. The minimum sponsorship radiotherapy permanently destroys the shopping with my husband. I don’t feel so and administration charges vary for each embarrassed when the coffee goes down walk. All participants will be given the salivary glands. opportunity to donate 50% of their As most of you are aware scleroderma the outside of the cup instead of in my sponsorship to the RSA. mouth with my husband there. At home sometimes affects the salivary glands, also mouth opening and swallowing can be my husband makes sure I have a Please remember to put on the form that difficult. Because of the cancer my only continuing supply of hot water to help the you want your sponsorship money to treatment is iloprost which is for the food ‘go down’, also to reheat my food as benefit the Raynaud’s & Scleroderma Association. Raynaud's. For some reason it does not it takes a long time to eat my meals.
Walk for Skin 2011
help the Raynaud’s but hopefully it may be helping scleroderma in some way. Before all this I was quite an active person. I worked until December 2003 (I was 63). I enjoyed the gym, aerobics, some pilates, golf, walking and gardening. Although it has been very tough going at times, I now go line dancing twice a week. I still like to walk even on chilly days. I look like an Eskimo in my jacket, hat, gloves, scarf, socks and boots.
My hands turn white, blue, black, red and like lots of you, the pain is sometimes unbearable. As for the scleroderma my hands and fingers are puffy, the skin very tight. The skin on my neck is described as like a rhinoceros skin. My facial appearance has altered and my grandson tells me I look old because of the wrinkles above my upper lip, my bent fingers and very cold, funny coloured hands. Because of my hands I cannot wear my rings very often and rings are still my favourite jewellery. My feet are affected so no fashion shoes
My speech has been affected. Sometimes To register and get more information people cannot understand what I am about the walks call Sheena Morjaria on saying. I suppose that’s part of the 020 7391 6352 or visit: dryness. I use saliva sprays, mouthwashes www.britishskinfoundation.org.uk and eye drops for the severe dryness. This goes on through the night and makes sleeping difficult. Despite many difficulties (including arthritis and osteoporosis), my husband and I still manage to go away on holiday. We have taken a January self catering holiday to Tenerife for some warmth a couple of times. No long flights for me. I try to keep my sense of humour but there are days when I feel low and there are tears, but there is nothing to do except carry on. I am lucky to have my iloprost in a small unit in hospital where the sister and her staff are excellent. I also have a very good, caring consultant. I have three lovely grandchildren and I intend to see them grow up. I would love to hear from anyone, via the RSA, who has systemic scleroderma and Raynaud’s. Maybe someone who has had head/neck cancer treatments. Pauline Goodchild
NEW 'COOL MILLION' KEY RINGS!
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Clear acrylic key rings to help advertise our ‘Cool Million Appeal’ £1.60 including p & p Please send cheque payable to RSA to 112 Crewe Road, Alsager, Cheshire ST7 2JA
RSA sta Feb Ho
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Fundraising Alsager Ladies Circle
Golden Wedding Anniversary
Burton on Trent Group
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Pictured are the RSA staff with Emma Sutton presenting Anne Mawdsley with a cheque for £200 on behalf of Alsager Ladies Circle.
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Sheila Palmer very kindly requested donations towards the ‘Cool Million Appeal’ in lieu of gifts to celebrate her 75th birthday. Many thanks for raising £500 in this way.
Pictured above left to right: Audrey Jackman, Kathy Allen, Lady Tindle, Eileen Stone and Patricia James
Member Alison Wright (far right) is a pilates instructor in Portsmouth and kindly organised a fundraiser with her group in aid of the ‘Cool Million Appeal’ raising £104.13.
Anne Mawdsley was presented with a cheque for £1,000 when she spoke at the 5th Anniversary meeting of the Burton on Trent Support Group. Pictured above (from left to right) are Helen Nutland, Liz and David Leese Mayoress and Mayor of East Staffs, Anne Mawdsley, Dr M Nisar, Barbara James Consort to Neil Atkin Chair of South Derbyshire.
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Madeleine and Bob Harmes, kindly requested donations to the RSA in lieu of gifts at their Golden Wedding Anniversary celebration, raising £175.
RSA member Audrey Jackman is a volunteer at the Downing Street Charity Shop in Farnham, which is owned by Lady Tindle. Each month the profits from the shop are donated to a different charity. We were delighted to receive a cheque for £1,000, which member Kathy Allen collected on behalf of the Association.
Isle of Man Support
On 4th March Helen Nutland received an award for Volunteer of the Year by East Staffordshire Community & Voluntary Services. She was Highly Commended and runner up to the winner for her work with the Burton Support Group for Raynaud’s and Scleroderma. The award was presented to Helen by MP Andrew Griffiths at the Marston Social Club. She said: “I was surprised and highly delighted.”
Bupa Great North Run We are delighted to report that Jaap van Laar, Professor of Clinical Rheumatology in Newcastle upon Tyne, is taking part in the Bupa Great North Run on 18th September 2011, to raise funds for the RSA. If you would like to sponsor Professor van Laar, please send your cheque to the RSA.
RSA Fundraising Pack
RSA member Esme Jackson organised a stand to highlight Raynaud’s during February Awareness Month at Noble’s Hospital, Douglas in the Isle of Man.
Laura Meadowcroft, a teacher at Rainford High Technology College in St Helens encouraged the year 9 pupils to mark February Awareness Month with a bake sale raising £85.
If you would like to receive a fundraising pack, which gives advice on how to organise a fundraising event and gives some inspiring ideas, please call 01270 872776 or email Hannah Thomason: email@example.com In the package we can offer sponsor forms, printed T-shirts etc. for anyone taking part in an event for the RSA
Contacts Wanted Ann Oryszka from Nottingham and Hazel Boyman from Basildon both have Raynaud’s and scleroderma and would like to hear from others in their area. Please write or email Head Office and we will forward your correspondence.
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Raynaud’s Survey Orion Pharma (www.orion.fi/en/), a pharmaceutical company based in Finland, seeks your help to collect feedback from people who suffer from Raynaud’s phenomenon in order to develop a new class of medication to treat this condition. Orion Pharma will use the information to better understand the medical needs of people with Raynaud’s and how they cope with the condition. Information will be collected on three main areas:
Warm That Sole
We are delighted to announce that the RSA has organised regional meetings in Leeds, Newcastle and Cannock. Members in the vicinity of these places will be sent details but all members, friends and relatives are welcome. For further details email Fiona Trotter: firstname.lastname@example.org or call 01270 872776. Leeds - Monday 13th June Newcastle -Thursday 14th July Cannock - Wednesday 20th July
Warm That Sole is a beautifully warming, soothing, antibacterial and antiseptic blend of essential oils. These oils were blended to treat all the symptoms accompanying poor peripheral circulation. These include chilblains, cold painful hands and feet and Raynaud's. People using Warm That Sole report rapid relief of some of these symptoms. Warm That Sole is suitable for use by most people except during pregnancy and breastfeeding, those suffering from epilepsy, and children under five. Cancer patients are required to seek permission from their oncologist before using the oils. Most oncologists readily agree to their use.
• Basic information on the responder (age, sex, country and region) • How people control the symptoms of Raynaud’s phenomenon • Background on the Raynaud’s condition
The feedback will be collected with a short online feedback form. Orion Pharma will NOT collect any personal information that can identify the responders in any way, and will NOT collect any electronic data from the computer (such as the computer IP address or similar). This means that the responder will remain totally anonymous when completing the feedback form. Orion Pharma will use the information collected for internal decision-making purposes only, to support its clinical development programme for Raynaud’s phenomenon. To take part in the survey visit: www.surveymonkey.com/s/raynauds1
Each member has different experiences of Raynaud’s and/or scleroderma and sharing them can be helpful in many ways - for research and information as well as for support. The RSA has just launched a new online resource as a way of bringing the RSA community together. This new, free site is aimed at helping people who are either For further information call suffering personally, or supporting someone 01625 869 966 or buy online at else who has the condition. It can also help www.footessentials.co.uk people working in the field who want more ways to learn about the disease or help with Green Help For it. Whatever the reason, comments on this Raynaud's Sufferers website will be invaluable. Turtle Doves are wrist warmers and For people to use the site and want to return fingerless gloves rolled into one. They’re to it, we need good, interesting content and designed to be worn on the wrist all day that’s where we need your help: we need helping to keep your wrists and hands your blogs, your comments and your warm. Made from recycled jumpers questions. You don’t need to have blogged they’re environmentally friendly and not before, you just need to write about things only do they look and feel great but that you may be affected by or interested in. they’re practical too. Every pair of Turtle Visit: http://raynauds.healthunlocked.com/ Doves is unique; they come in all the and on the top right hand side you will see colours of the rainbow. the word "join" so just click there to register. For further details or to place an Remember, even if you don’t become a order visit: www.turtle-doves.com blogger, you can comment on other or call 01743 344702. people’s posts once you have registered. Don’t hold back - wouldn’t you like your words to make a difference? If you have any queries about healthunlocked contact Fiona Trotter on: RSA Patron Roger Jefcoate 01270 872776 or email: CBE (pictured right) from email@example.com Mursley, has been given a top honour by St John Ambulance in recognition for 50 years’ community service. Roger Keep up to date with the latest news from was recently rewarded with the title of Serving Brother in the Order of St the RSA by following us on Twitter John. People can only become members of @raynaudsuk the Order of St John if they have shown or visit Facebook exceptional service to its key foundations. www.facebook.com/raynaudsandsclerod Roger is very supportive of the work of the ermaassociation RSA and his wife Jean is a member.
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'Outpatients' is an innovative, non-profit, co-operative of patients, medical students and doctors. They need you, the patient, to help teach medical students how to become excellent doctors. ‘Outpatients’ organise one day courses where small groups of students examine patients under the supervision of experienced doctors. To find out more and register to participate in a course near you visit: www.outpatients.org.uk
Please remember to send us your Raynaudʼs Tips and answer the bowel questions if appropriate (see reverse of cover sheet) PUBLISHED BY: RAYNAUD’S & SCLERODERMA ASSOCIATION
Charity Reg. No. 326306
112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: firstname.lastname@example.org Website: www.raynauds.org.uk EDITOR: Anne H Mawdsley MBE Raynaud's & Scleroderma Association © Copyright 2011. All Rights Reserved.
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